When the Patient Becomes the Primary Caregiver

Primary Caregiver After undergoing serious surgery or suffering from a life threatening illness, it is quite normal for you to be looked after by your loved ones when returning home. They may be informal caregivers or formally listed by the Government as your primary caregiver.

In my case, it was some months after returning home when a Government department wanted to ask me some questions and required me to complete a form. My husband took over the phone call as I still got somewhat confused about all the things I had to do and could not complete the form as I could not read.

When my husband told them this, he was asked “Are you receiving assistance from the Government as the primary caregiver?” When he responded “No” he was advised to register as my primary caregiver and he would receive a small stipend that would assist us a little.

Unfortunately two years after my stroke and brain tumor surgery, I was still unable to read or complete forms and still got confused with managing different activities and discussions. However, at this time, my husband had to have a full knee replacement and was confined to a wheelchair for nine months as he was placed on a waiting list for surgery.

As I could not shop on my own (I could not read the labels on food containers and could not work out the money) I now had the added burden of having to get a wheelchair in and out of the car as well as the shopping. It certainly tired me and when I got home I had to rest before I could unpack the groceries.

Then, when he came home from hospital and was unable to walk on his crutches without severe pain and had to go to physiotherapy and hydrotherapy, I became his primary caregiver.

It was a strange situation to be in. We figured that one of us had to be fit enough to help the other and in case we both became incapacitated at the same time, we arranged to have ourselves assessed as suitable for respite care if we needed it. This meant that in an emergency, we could be placed in a home until one of us was in a position to look after the other and the home.

In my book ‘Thank God I Had a Stroke’, you can read more about just how important my primary caregiver was in speeding up my brain tumor and stroke recovery. I think caregivers are not given enough credit and support for the wonderful work they do to assist the seriously ill recover.

Hints and Tips
Don’t wait until you really need help when you are coping with illness. The length of time it takes for Government wheels to turn may mean that when you need help it may not be forthcoming immediately. Better to get yourself assessed and prepared for emergency assistance when you are initially aware that your health (or the health of your caregiver) can deteriorate at any time.

33 thoughts on “When the Patient Becomes the Primary Caregiver

  1. Ash Kingsley

    Great tips. In this case, better late than never is not good enough. When it comes to health, erring on the side of caution and making contingencies is the way to go. We only have only one life to live and health is priority no matter what anyone says. Thanks!

  2. Lisa Perkins

    Wow, this really had to be tough on you, while you were still in the process of your own recovery…. You sound like such a strong and Amazing Woman!!!

  3. Ana B.

    Great post. This is a tricky situation and I agree that a person shouldn’t wait until you’re in a situation where you and your caregiver are ill. People should prepare beforehand for the worst case scenario.

  4. Mary McKinney

    What a great article. We can’t wait on the government at all. We have to take care of ourselves.

  5. Wendy Mitchell

    Wow this is a struggle that you overcame. I know for me personally, I suffer from fibromyalgia and at the time I 1st learned I had it, I was taking care of my father as he lived with me and my 2 small boys. It got to the point I couldnt take care of him-take him to Dr appts etc…due to my own illness getting worse. I had to put him in a board and care home. He wasnt happy at 1st and ignored me. He has been in 2 now, and for the most part he is happy where he is, but does still grumble that he can take care of himself. He has dementia so living on his own is not an option.

  6. stanza

    This post is really informative and I could relate to this as I had met with same kind of situation in my home.and Its really advisable to get assessed for emergency assistance from before.Would like to read ur book.

  7. chris

    That is why it is important to be kind to others because you never know when you may need a caregiver.

  8. frankrob

    I think caregivers who works with good simpathy & good comunication skill will give enough credit and support for the wonderful work they do to assist the seriously ill recover.

  9. Chris W.

    It sounds like you really had a struggle being a caregiver to your husband while you were still having health issues. I can’t agree with you more that you need to get the paperwork in early because you never know what the future will bring. I hope that all is well with you and your husband.

  10. Samantha R.

    Its great to hear about your experience, there is so much that can go wrong it is important to be prepared.

  11. rose

    This is so true. Getting assistance from the government can really take a long time. Having someone there to give assistance in the meantime can really come in handy.

  12. Jack J

    Some situations can get serious very quick and it definitely is worth being prepared. It is important to have a plan if your caregiver gets ill. Some really good information here and glad I got to read.

  13. Hailey Singer

    Thank you so much for the advice. It’s such a difficult position to be in, and you have dealt with it wonderfully.

  14. Jane

    Thanks for the insight. People often underestimate carers and often believe they play an unimportant role in the community. This article provides a great demonstration relating to how valuable carers are regardless of medical conditions that have to endure.

  15. anegeku ekwa

    whoa great article this teaches me on how to be alert at all times so I can hopefully cope with anything that comes my way.

  16. sarwar

    Excellent article and advice. It is always wise to prepare in advance for emergency assistance.I agree, you need to make preparations before it gets really serious.

  17. Marie L

    Wonderfully written. Waiting and not acting for your health is, I hate to say it but, asking for trouble.

  18. Brian

    I’ve been in similar situation with my uncle who had tumor removed from brain stem. He had hospice care and if not for their help, my aunt wouldn’t have been able to manage 3’children and my uncles constant care.

  19. Matt

    What an amazing blog, I look forward to reading your book to give me guidance in the care issues I am having. Thanks!

  20. Indumathi Palanisamy

    Great article,I agree, you need to make preparations before it gets really serious.You sound like such a strong and Amazing Woman!!!


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